Join the fight against stigma and pseudoscience in New York

This weekend, the New York State Psychiatric Institute is hosting a conference on psychosomatic illness at Columbia University Medical Center — and they invited Per Fink to speak.  If you have watched Unrest, you know that Fink’s clinic was responsible for the involuntary institutionalization of Karina Hansen, a Danish young woman with ME.  
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]Hansen was kept against her will… For the first year, she was forbidden to see her parents. She begged to go home.[/pullquote] Hansen was kept against her will for three and a half years. For the first year, she was forbidden to see her parents. She begged to go home.
When Fink’s clinic could not cure her, she was diagnosed with Pervasive Refusal Syndrome — a pathologization of her unwillingness to obey instructions she knew would make her worse.
Fink has a hypothesis that ME, IBS, Whiplash, Lyme, Fibromyalgia, and many other illnesses are psychosomatic. He groups dozens of illnesses together under the label Bodily Distress Syndrome (BDS).  Fink’s clinic teaches doctors how to retrain patients, to convince them they have a psychosomatic illness.
This is what is being taught at Columbia on Saturday and Sunday at the New York State Psychiatric Institute’s conference, for continuing education credit.  When people sent letters of protest, they were issued a boilerplate response that stated that ME was not the focus of Fink’s talks, and that no presentation was specifically about ME.
Columbia’s Center for Infection and Immunity (CII) released an initial, generalized statement discussing the embodied nature of myalgic encephalomyelitis.  But then the next day, an article was released by the Aarhus University hospital, implying that Columbia was working shoulder-to-shoulder with Fink:

But our research can not stand alone. For instance, researchers at Columbia University are in the forefront of examining if any biomarkers can be found that could be helpful in making more accurate diagnoses and give us a better understanding of the mechanisms triggering the functional disorders.

The article added,

In Denmark, some individuals are against researchers’ deviation from the classic distinction between physical and mental illness while trying to examine illness and treatment in a broad and multifactorial or bio-psycho-social approach. This resistance is an international phenomenon and in The States, some of the opponents have formed groups calling themselves ‘patient activists’. A group of activists has taken initiative to a petition against Per Fink’s active participation in the conference in New York. However, the organizers of the Columbia University conference have resisted this attempt to restrict the academic free discussion.

This is the party line when it comes to patients calling for better treatment, better evidence, better science, and more open communication between scientists and the patient community:

  1. People with ME are framed as activists.  An activist is a person who campaigns to bring about political or social change.  Bad science contributes to the needless disability and death of people with ME, challenging their autonomy over their own medical treatment and their physical freedom. If activism is the dogged defense of rigorous methods and sound science in the service of saving lives, then all people who care about good science should be activists, and people with ME doubly so: we are fighting for our lives.
  2. Patients are presented as anti-science.  Perhaps this is the most misleading accusation of all, since people with ME are the strongest defenders of methodologically rigorous, sound science.  Patients want nothing more than to be cured, and know that requires science that is meticulously logical and honestly reported.  AHRQ, CDC, and the National Academy of Medicine (NAM) all have produced statements that verify that CBT is not an effective treatment for ME.  Per Fink does not have science on his side.
  3. Patients and only patients are framed as objecting to bad science.  This ignores the input of scientists like Stanford’s Ron Davis, Cornell’s Maureen Hanson, Columbia’s Ian Lipkin, Harvard’s Mike VanElzakker — and the over a hundred luminaries who have requested the PACE trial paper be retracted.
  4. Patients are presented as having a uniform belief system that includes a disdain for mental illness.  As patients with a stigmatized illness, we stand in solidarity with individuals who have diagnoses of mental illness and for the right of all people with mental and physical disabilities to accessible and appropriate treatment options. We will not debate the embodied realness of our — or any other — disease; we will not pretend there is only one seat at the table; we will not let Per Fink pit one disabled community against another. Being physically disabled does not preclude a mental health diagnosis and vice versa. We look forward to the day when someone with ME can receive the treatment they need to be their healthiest selves without stigma, whether for co-morbid diagnoses or to cope with the grief that comes with being diagnosed with a chronic, debilitating illness.  However, as thousands of studies show, no amount of mental health care will address the underlying pathophysiology of Myalgic Encephalomyelitis.
  5. Patients are presented as having a uniform belief system that includes a refusal to believe that the mind can affect the body. The mind can and does have an effect on the body.  However, believing that the mind can make the body do certain things is not the same as believing that the mind can make the body do anything. Extraordinary claims — such as Fink’s — require extraordinary evidence.  The evidence base for GET and CBT is widely acknowledged to be poor.
  6. When all else fails, appeal to freedom of speech.  Everyone is entitled to an opinion, but no one is entitled to a platform from which to espouse that opinion.  Columbia is in no way required to provide a platform for Per Fink. Moreover, free speech has limits — we often hear that it is illegal to shout ‘fire’ in a crowded theater.  This is illegal because it is a lie that can directly cause harm.  Fink’s unscientific claims are exactly that.

Activist Terri Wilder and #MEAction’s Director of Scientific and Medical Outreach Jaime Seltzer had the opportunity to speak to Ian Lipkin, the John Snow Professor of Epidemiology at the Mailman School of Public Health at Columbia University and Professor of Neurology and Pathology at the College of Physicians and Surgeons at Columbia University. Lipkin is also Director of the Center for Infection and Immunity, an academic laboratory for microbe hunting in acute and chronic diseases.  His team is the recipient of one of the recent Center grants from the NIH. [pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]If activism is the dogged defense of rigorous methods and sound science in the service of saving lives, then we should all be activists.[/pullquote] After the release of this misleading new statement from Aarhus University Hospital, Lipkin responded personally: “The Center for Infection and Immunity (CII) is not involved with the upcoming Psychosomatics Conference hosted by the New York State Psychiatric Institute. We do not collaborate with Dr. Fink,” he said. “I have never met him. The CII and the CfS for ME/CFS remain committed to the biological perspective of this disease and reject the notion that this is a psychosomatic illness.”
Terri Wilder has created a petition asking Fink be disinvited from the conference that has gained over 10,000 signatures. There will be a protest at Columbia this Saturday, October 20.  
ME patients stand together against bad science and medical abuse.  No patient should be treated as Karina Hanson was treated, no matter her diagnosis — and no clinician who has made a career abusing patients should be honored or elevated.  Join us in the fight this Saturday and make your voice heard!

Click to learn more about what you can do today:

Sign the petition.
Attend today’s protest.
Contact NYS Office of Mental Health, who are co-sponsoring and providing CE credit.
Fight disinformation by promoting the Unrest Continuing Education for clinicians.

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